Campaign to raise awareness about rare diseases and their impact on patients’ lives
Today thousands of events are taking place throughout the world in support of Rare Disease Day. The campaign, which has been running since 2008, and takes place on the last day of February each year, aims to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives.
Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances – a non-governmental patient-drive alliance of rare disease patient organisations representing 705 rare disease organisations in 63 countries – thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage to help raise awareness.
A rare disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000. A disease or disorder is defined as rare in the US when it affects fewer than 200,000 Americans at any given time. In Europe, as many as 30 million people alone may be affected by one of over 6,000 rare diseases existing. These are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease, but also from patient to patient suffering from the same disease.
This year, Arthritis Research UK, has highlighted a rare disease called Behçet’s syndrome, to mark awareness of Rare Disease Day. This is a condition that causes ulcers and eye inflammation and is very rare in the UK, affecting only about 2,000 people.
For more information on Rare Disease Day visit www.rarediseaseday.org or Behçet’s syndrome at http://bit.ly/1bzd5Du
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